Letter of the Week: Mother Discusses Advocacy in Schools

I read with interest the article by Cynthia Heinz in which she spoke to her local school board, describing a worst case scenario for a child with severe hypoglycemia. As a veteran parent with 15 years of dealing with diabetes in our local public school, I have a few things to add to the discussion.

First, parents who want to advocate for a school nurse or other medical staff should start early in the budget discussion for the coming year. In our town, the officials then had time to go to town meetings and request money directly from the townspeople to hire a nurse. In other towns and cities, no matter what form of government they might have, early advocacy, before budget numbers are set and allocated, will help make a nurse possible. Relying on kindness and concern does not work; relying on fear of liability is key.

Second, it is very important for all parents to understand that EMTs do not have the ability to do anything for a child who is unconscious due to low blood sugar. All EMTs can do is transport. So many articles give the impression that calling 911 will bring help. EMTs can use glucose gel if the child is not totally unconscious, rubbing it on the inside of the lip and cheek, but they will NOT administer glucagon. Paramedics, on the other hand, will do IV treatment. Parents should always instruct the schools to do glucagon before or while the school calls 911. Schools should also be asked to request paramedics, if available in your area.

Although we have always had a nurse and an LPN, or aide, in our school clinic, Massachusetts law does not permit the school nurse to train lay people (teachers and other staff) to do glucagon. Therefore, we as parents have had to do that training for teachers, coaches, drama and music directors, and so on. I don’t know if other states are different or if the school nurses cited are doing this against regulations, but the law in our state certainly needs to change. Perhaps glucagon could be delivered in a form similar to Epi-pens, which most states do allow teachers and other lay staff to use.

Furthermore, nurses are not allowed to make medication decisions for our kids with diabetes. If the child’s insulin needs change for reasons such as exercise, stress, or illness, the nurse has no discretion to make adjustments. Parents and the endocrinologist must provide guidelines each fall for the nurse, but these are often too rigid for a child whose diabetes is hard to manage. It is impractical for a school nurse to call the endocrinologist every time insulin adjustments need to be made, so the child’s care suffers. In these days of fine tuning and “tight control,” this situation needs to change.

Finally, for staff training purposes, we, the parents, found it helpful to meet with staff and teachers at the beginning of each school year rather than relying totally on the nurse. We were able to explain the medical side, as well as the emotional and developmental sides, of diabetes in a way that was geared specifically to our child, using materials from JDRF and ADA to prepare staff for our presentation. Our child attended all these meetings as well.

Getting our child through school, even with two nurses, required a lot of time and attention from us as parents. Having a nurse, or even two nurses, was far from a panacea. To be honest, we and the other family in our town who has a child with diabetes were happiest the year the school provided a “diabetes aide” whose job was exclusively the two children. Because that aide was not hindered by state Department of Public Health regulations, the aide had a little more flexibility and could take a little more responsibility for our child’s care. The aide went to where our children were, whether the classroom or the playground, so their lives and education were not disrupted by trips to the nurse’s office, and the other children became very matter-of-fact about diabetes as well.

Therefore, rather than advocating for nurses, I think it might be better if parents advocate for two things: positions for diabetes aides and a change in DPH regulations to allow EMTs to administer glucagon. These two changes would, I believe, keep children with diabetes safer and better integrated into “normal” life at school.Pamela Brindamour Rockport, MA

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